You feel it the moment you walk through the apartment door: something very special is going on in this modest home.
Brian has Amyotrophic Lateral Sclerosis, Lou Gehrig's disease, and is dependent on a ventilator to breathe. When his lungs collapsed in 2012, his life hung in the balance for months. When he was ready to be discharged from hospital, he was expected to move to a long-term care home because of the ventilator, but his wife Barb had other plans. "He wanted to come home, and I promised him that he would come home," she says. "When I set
my mind to something, that's it."
Brian’s eyes sparkle as he listens to Barb talk. He sits comfortably in his wheelchair, with Sheba the dog curled up in his lap. Is he happy to be home? He answers unhesitatingly, “Yes!”
Care Coordinator Laurie Henderson says it's still relatively unusual for a ventilator-dependent patient to be cared for at home. "Brian's hospital care team knew it would be quite a challenge," she says. At London Health Sciences Centre, the hospital and home care teams put together a comprehensive plan and Brian came home in December.
Henderson ensures that the right supports are in place, including in-home physiotherapy,
occupational therapy, respiratory therapy and speech-language pathology, a nutritionist to help manage Brian's enteral feeding, shift nursing during the day, and the services of a visiting nurse and a wound care specialist.
Annie Morris, a Nurse Practitioner, monitors his medical condition carefully. "When a medical person goes into a home, they see things differently," she says. "I look at the whole person, and I can prescribe, treat, renew medications, and call the doctor right then." She also connects a medical team that includes Brian's family doctor, the ALS clinic and the respirologist. The goal, she says, is to prevent Brian from having to go to the emergency department by heading off problems.
Charlene Spector, a regional manager with the ALS Society of Ontario, supports the couple, and they count on the OneCare Mobility Bus to get to and from appointments. The care team, including Barb and Brian, meets every three months or as needed when Brian's condition changes.
Henderson says Barb's determination is the secret to supporting Brian at home. "She's very protective and a great advocate for him. We build the supports around them, so that they feel safe and supported." Morris adds, "If it wasn't for Barb's absolute certainty that this was going to work, it wouldn't."
Barb is quick to deflect any praise. "Our lives haven't changed much, besides the ventilator," she says. "Everything is just day by day. Nobody is allowed to make negative comments in my house."
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